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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    We can't do the corn/quinoa pasta. I do try to limit it but they get rice in some form almost at every meal. Bread, pancakes, cereal, pasta or actual rice for a side dish. They are kids. Giving them a salad would result in them not eating it. We do potatoes as side dishes but that doesn't help with breakfast and lunch.
  2. StephanieL
    We did the biopsy after a VERY hight ttg and it did in fact come back negative. We were give 2 options (go gluten-free and watch the blood work or scope every 6 months indefinitely) by the top Celiac disease Dr. in the US. Fast forward 5 1/2 years and I wish we did have more clear/concert proof because of other inconsistent blood work and issues. ...
  3. StephanieL
    Yeah, sorry about that. I wasn't very clear. I haven't been sleeping much lately so I'm a bit off! I haven't see testing recommended, no. I am concerned though especially since I have kids who are all gluten-free. I worry that we are robbing Peter to pay Paul so to speak with fixing the Celiac disease and then putting them at risk of other health...
  4. StephanieL
    No, I was asking if people have had blood testing. That is why I posted in the post-dx area and not the food area.
  5. StephanieL
    I know there has been some research about arsenic in rice. Being as many with Celiac disease depend on it, has anyone been tested for it? My concern is with little people. Mine are all under 10 and I will admit, I worry about this more than I would like.
  6. StephanieL
    I only know these things because I worked in one for many years! Our brand of generic synthroid is $12/bottle of 100 pills. Kiddo takes 1/2 a pill a day so it lasts forever! lol I would LOVE to try the natural thyroid stuff (his goiter has gotten bigger in the last year )I just am hesitant to use it on a kid
  7. StephanieL
    I have mentioned this before, but with cheaper meds it may be useful to buy a full, unopened bottle. At the pharmacy they use the same trays for counting all the meds they do. Many times pills get broken/crushed in the shipping process and leave pill dust all over including the counting trays. So even if a med is safe, depending on a persons sensitivity...
  8. StephanieL
    We have more than Celiac to deal with and while we don't eat out often, when we do we choose one of several options. 1) Red Robin 2) Chipotle 3) Higher end with a Chef, not just cooks. We *may* eat out as a family once a month or so. In the last 4 years the only time we've had an issue it was minor, not believed to be gluten related and happened...
  9. StephanieL
    Follow the money. If they are trying to sell you something, they are going to try and scary you into buying it. Hang in there!
  10. StephanieL
    What is your point of posting her CV on a thread over 8 months old? She is apparently not very liked/trusted in the Celiac community. Knowing her background doesn't change the incorrect information she was posting about.
  11. StephanieL
    They will not have. I would be 99.9% they know little to nothing about Celiac nor how it would be something they need to help you manage in a school environment. Some things you may or many not have thought that YOU will need to teach them is: 1) Ply-doh- This is a huge no no for kids with Celiac. Some places will bring in gluten-free playdoh AND...
  12. StephanieL
    Sing it sista! lol Why is it easier to make them lunch when they are home vs. packing? lol
  13. StephanieL
    I think it's admirable to want to send something similar but that's not something that'll be realistic for the long haul. It just isn't. And ANY school you send your kid to will have "buyers and packers" so there's a difference there. It's not a huge deal really. And kids don't seem to get board (as easily) with things like adults do. One thing I remember...
  14. StephanieL
    Most people I know do not trust a school cafeteria to provide safe meals/snacks for kids. I would not go over anyones head unless/until you are forced to. If you have a good working relationship with the teacher, keep that up. Decide if them providing meals is something you really want to push for. Keep in mind if your child will continue in that...
  15. StephanieL
    Just as a note, NONE of these can be done on your child now because of being gluten free for a few months because the results will not be accurate. The only test you could run now (which isn't in any way diagnostic) is the genetic test. Being as you (Mom) are positive, chances of kid being positive for the GENETICS is high so it just means there is the genetic...
  16. StephanieL
    A positive result is 50/50 on accuracy. A negative result is about 90% accurate. it is not recommended that you have allergy testing unless there has been a KNOW reaction because of the unreliable nature of these tests. (This is for IgE mediated allergies via blood or skin testing- NOT alternative testing which has no science to back it up.)
  17. StephanieL
    I would seriously consider putting the child back on gluten for testing. Unless you have a Dr. who is willing to dx based on genetics, your history and the childs history, getting an accurate diagnosis. As you know this is a life long condition to manage and for things like schooling and hospitalizations, you need to know what you're dealing with. I...
  18. StephanieL
    Are there any Red Robins up there?
  19. StephanieL
    It says up to 15 and I think with EoE it's above that so it may be on the boarder. I think a lot of times they try meds and scope again to see what happens when on meds. I know there are EoE people over on a site called Kids with Food Allergies (though I know EoE isn't an allergy, they have a GI specific form). Perhaps check with them over there.
  20. StephanieL
    I would ask the new Dr. why they are qualified to deny Dr. #1's diagnosis. Then I would go find a different Dr. Seriously, if that is what it does to your kid and your bloodwork was highly positive and she's done well after being taken off of gluten the only other thing I would think they may want is the genetic testing. There is talk of the "4 of...
  21. StephanieL
    While allergies do run on a spectrum, if the person doesn't need to carry epi pens because they could die from exposure, allergy isn't the correct term. IgE allergies are diagnosis with testing that isn't all that accurate and clinical presentation. If the Dr. isn't sending you out the door with a script for epi's then it's an intolerance. Same treatment...
  22. StephanieL
    It's a little more than "stuffy nose and itchy eyes". Food allergies commonly result in anaphylactic reactions which can be fatal. If you kid had a dairy allergy, you would know (likes like vomiting and diarrhea, hives, breathing difficulties and so on) from immediately to 2 hours after ingestion of the offending food. Environmental allergies are more like...
  23. StephanieL
    Celiac is pretty cut and dry. You remove gluten and your remove the disease process. Unless you are having ongoing issues, if it's a new dx, I wouldn't bother with more. Perhaps a nutritionist but even that is pretty hit or miss if there is a good one. We've never found one. As for what to do about testing younger kids, they say when you start them...
  24. StephanieL
    Daiya is best served hot and after you haven't had the real think in some time Just getting off diary, NOTHING is going to be like the real thing. TRUST me. I've nursed 3 babies for a total of 7 years while each one had to be off all dairy (and other assorted goodies). It takes some time to forget it!
  25. StephanieL
    You should be consuming gluten for weeks before blood testing, not 2 days.
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